I was prompted to begin educating formal and informal caregivers of those with Alzheimer’s years ago when I realized how many people on this journey had no understanding of this insidious disease. This, in spite of the fact that they either worked or lived in the trenches with this illness almost daily.
Here it is, 16 years later and I have lectured in colleges, led community education programs, written countless articles, I’m featured on two different radio stations and most recently completed my first book; Join the Journey-Care for the Alzheimer’s Caregiver. I recently had a conversation with a woman who called me looking for help with her husband. She was in the thick of it and a local physician suggested she contact me to get some much needed assistance. I could hear the desperation in her voice as she took one deep breath and unloaded with all of the challenges she was having. Challenges with bathing, dressing, reasoning, wandering and more. This gals husband was touching all of the bases and she was lost. I realized how lost when I asked her if she had contacted the Alzheimer’s Association? Her answer? “I’ve never heard of it.” I thought, how can that be possible? Hasn’t everyone heard of this organization along with The Heart Association or The American Cancer Society? Apparently not. Then I reminded myself of the kind of battle the “at home” caregivers of those with Alzheimer’s are fighting. She had no children or siblings and when I asked about friends she could call on she reminded me of another one of the many losses they have at this time in their life when she answered, “most of them are dead.” Like so many, she was “standing by her man,” “through sickness and in health;” especially “in sickness.” But now it was getting too much for her and her “fly by the seat of her pants approach” to caring for him was no longer effective and to her credit, she was beginning to realize the toll it was taking on her.
I’ve had the honor of giving my talks on understanding Alzheimer’s in almost every venue you can imagine; from Mass. General Hospital to Church adult groups. I will usually ask my audience how many of them have been impacted by this disease either directly or indirectly and not surprisingly about 50% of the attendees raise their hands. As I talk, I notice familiar nods of recognition as I identify a behavior they’re dealing with as well as looks of appreciation as I was able to help them now understand what was going on and how to deal with it.
If you’re one of those that’s now in the world of Alzheimer’s care or perhaps you know of someone that is, you both need help and you need information. Along with my book, there are many other excellent publications that can and will help you navigate this unfortunate path. The 36 Hour Day and The Best Friends Approach to Alzheimer’s Care are just two of them. Your local Alzheimer’s Association is available to provide you invaluable insight as well as provide you the location of a support group near you. Adult Day Centers as well as professional agencies that have dementia specific experienced staff to help you get a much needed break are two more very valuable resources. Yes, changing their environment can be a challenge but it’s one they can help you with as it’s an issue Adult Day Centers deal with daily.
I’m confident with the information that I gave this dedicated wife but what I’m not confident of is whether or not she’ll take the necessary steps to get herself out of harms way. Please. Be your brothers keeper. If you know a caregiver that needs help, share the resources I’ve shared with them. As we all know, it’s easier to accept help than it is to ask for it.
Questions? Please email me at repe@careforcare.yabanjin.com. Remember, Join the Journey.